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TOPIC: Late onset generalisation/bladder involvement?

Re: Late onset generalisation/bladder involvement? 5 years 5 months ago #1127

  • shakes
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Possibly but at present I don't actually have a neurologist, I hadn't bothered persuing the eurologist as I wanted to get my dystonia under control.
when I meet people for the first time my speech often goes and I just babble incoherently.(another symptom noone understands) so I tend to avoid any of those situations. It can knock me backwards for weeks.
I'll probably hang on until I see [moderated - we cannot comment on individual doctors] . He's supposed to be good!!!!! so we'll see .
take care xx
Last Edit: 5 years 5 months ago by Paul.King.
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Re: Late onset generalisation/bladder involvement? 5 years 5 months ago #1139

  • butterfly
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Hello shakes
I also see [moderated - we cannot comment on individual doctors] he is a very good neurologist. He knows about my problem that I had with my bladder and that in the end I had it removed. He increased my levodopa (sinemet) dose in march as another dr put me on it. Anyway im now on a bigger dose and the improvement is amazing.
Hope you get on ok when you see him
Take care butterfly x
Last Edit: 5 years 5 months ago by Paul.King.
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Re: Late onset generalisation/bladder involvement? 5 years 4 months ago #1234

  • Anke
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Dear Shakes - how are you? Hope your visit to the new neurologist went well. I was having a look on an American Dystonia site and came across some things on dystonia voice involvement, so thought to send it to you in case it sheds some light of the problems you're experiencing. Hope the pasting of the link will work!

Wishing you all the best and a lovely evening, Anke

community.wegohealth.com/forum/topics/20...94%3AComment%3A28655
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Re: Late onset generalisation/bladder involvement? 4 years 11 months ago #1896

  • Anke
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Just a little update on the botox injections I had against the dystonia of the urinary sphincter - it's been about 7 months now since I've had these injections, and it's only now that the effect seems to be wearing off slowly (although things are still much much better than before). But as I will have my CD botox injections at the end of this month I will be treated on the same day for my bladder again (from what I understand these separate injections need to be given close together so as to not build up resistance against Botox). But just thought to post that this treatment has helped tremendously and that from my point of view it is definitely worth going for when experiencing urinary problems which might be linked to dystonia.
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Re: Late onset generalisation/bladder involvement? 4 years 7 months ago #2246

  • Supergran
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Have just been discharged from hospital with problems in the bottom half of my spine and also had not been able to pass urine for around 18 hours. I was catheterised to empty my bladder and the nurse was some what concerned at how much urine left my body and that I had no sensation of needing the toilet. I am now on crutches to assist my walking. Also when I go to the loo I have loss of sensation from my bladder I just wanted to know if this is normal and any tips would be gratefully received....


Christine X
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Re: Late onset generalisation/bladder involvement? 4 years 7 months ago #2247

  • Anke
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Hi Christine - so sorry to hear. It does sound like a matter of real concern, especially since you did not realise that your bladder was full. In my case I also couldn't empty my bladder but did have the urge to go. Before I started having Botox injections in the urinary sphincter muscle (which have almost completely solved the problem) I had been taught to self-catherise as retaining urine can cause some other real problems. You may want to see a urologist if this problem continues?
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